Friday, January 23, 2009

Judged Unworthy

Have you heard the story of Barry Baker? On November 29, Baker, a disabled man in Sussex, England, called for an ambulance. He recognized that he was having a heart attack. He wanted to live. The dispatcher stayed on the line with him, waiting for help to arrive. Before it did, he collapsed, but the dispatcher kept the line open. When the ambulance arrived, the two EMT workers opened the door to Mr. Baker’s house. They saw a messy house. A very messy house. They saw a very large man, a man with a disability, a very large man with a disability, collapsed on the floor of a very messy house. They talked about him. They talked about his house. Expressed disgust at the way he lived. They talked about whether or not he was worth saving, agreeing to report that he was dead when they got there. The dispatcher heard it all, and turned the tape over to authorities. The EMT workers were arrested, and are free on bail until late in February.

It happened on November 29, it’s an old story. It was quite a bit later when I heard it. Late in December, the company charged with cleaning the house chose to release photos of Baker’s home, allowing all the world to see and comment upon and judge the state of Baker’s living room. People like to see the evidence, decide for themselves. Worthy or unworthy? Barry Baker was left to die in this living room. It is too late for him.

Just over a week ago, Dave Hingsburger posted a blog in memory of Baker at Chewing the Fat. He promised to tell people the story, to keep it alive. Now, I am telling it here. Baker’s story, on its own, is important for many reasons. It demonstrates the occasional failure of agencies sworn to help, of people paid to help, to remember that they are not endowed with the authority to decide who lives and who dies. People who are disabled, people who are “difficult,” are equally worthy of life and dignity.

This is a truth that has once again been called into question.

Minna Mettinen- Kekalainen, a 42 year old autistic woman with ALS has been denied services she needs to continue living. Apparently, the nursing agency that served her through the North East Community Care Access Centre in Sudbury, Ontario has reported harassment by Ms. Mettinen-Kekalainen since she threatened to report them for not following her doctor’s orders. The agency has said that they would not deny services to anyone, as long as their workers were “safe.” Meanwhile, the many forms of assistance she needs, listed by her as “basic hygiene, communication, mobility, and administration of medications, food and water” have been denied for forty days. It is hard to imagine that she could be much of a threat to anyone. No, she is being punished for speaking up for her rights. Judged as unworthy of care.

I hope you will join me and bring Barry's story to others, begin a conversation of the dangers of disphobia and the need for us to be alert to the fact thatthose who are supposed to save us, may indeed kill us, that those who are supposed to care for us, may indeed hate us, that those who we are supposed to trust - can't be.

Here it is. It is happening again, more slowly, no less inhumane.

Please help spread Minna's story. If you have a blog, post a line or two about Minna. Contact one or more of the people listed here. Unworthy? She is a human being, and that should be enough.

Forwarded a link to this post (as a really good entry point to press articles and blog posts by Amanda Baggs, Andrea Shettle, and Stephen Drake) to the AutCom board for further dissemination.Thanks, Bev, Amanda, Andrea, and everyone else who's been publicizing this and putting pressure on the agency denying care and on the authorities charged with oversight in the matter.

I don't really know what to say about this, except to wonder at what point in their medical training, exactly, these EMTs were instructed that it's only their job to save people who are thin and good housekeepers.

And denying an ALS patient care because she, apparently, somehow made the nurse "unsafe" by making a complaint that they weren't following her doctor's orders... What were these orders, I wonder? How unsafe was she?

It is a sad world we live in if people who are trained to save lives can stand around discussing someone and making judgements on the way he lives while he is dying. Minna's story is equally disturbing - very sad.